Thursday, March 24, 2016

Grieving a loss

There are several posts that I have sitting here in my draft folder about Mr C, about his first birthday, about looking back over that first year, and, what it's like having baby with a tracheostomy; but I think this is a post that needs to be put out there.  In all of my preemie blogs that I follow, I have only come across this topic once

It may not be important to anyone else but me, and many others that have been involved with a preemie, but I believe it is important nonetheless.

When you have a premature birth there are so many things you are dealing with, so many questions running through your head, new milestones that you are following before the regular baby milestones. And there are so many people there to support you through that entire process. But there is one thing that I have been struggling with at 14.5 months after going into labour that I had no idea I would be dealing with.

I find myself grieving a loss.

That's right, a loss. I lost my 3rd trimester, I lost that full round belly, I lost feeling those uncomfortable kicks in the ribs and just being all around uncomfortable, I lost counting down the days to my due date and I lost the chance to go through labour and contractions.I was not prepared to deal with this once we were out of NICU and home with our little man. I was just so relieved that by the time we were home he was doing all the things a normal baby does (aside from breathing on his own). But here I am, and I'm hoping that writing this out, sharing this other side of premature birth will help me to work through this, but also help other preemie moms that are feeling this way know that they are not alone.

When we were in NICU and I was feeling jealous about all those moms whose due dates were before mine and still pregnant and upset when those moms did have their babies and were able to take them home and cuddle them and have sleepless nights because they had babies crying throughout the night.  

Now don't get me wrong I love these families and I love watching my young church grow with so many families growing, many with their first child now, but I cannot help but feel that twinge of loss when the answer to the question "how far along are you?" and they can answer, 25 weeks, 26 weeks, 27 weeks... All I can think of is at 25 weeks I was sitting in a hospital bed, listening to a neonatologist go down the laundry list of what would be wrong and what could happen if our little gift decided to come then. And by the end of 26 weeks we seemed to be going strong and everyone was crossing everything hoping to make it just a couple more weeks, and then, one day before 27 weeks I woke up and had one of the most traumatizing nights of my life. 

But we have made it through the NICU process and have a wonderfully energetic little man and for that I am so thankful and just hope that if/when the time comes to have another little one I will be lucky enough to experience the pregnancy a little longer.

Sunday, July 19, 2015


Week 21 - June 7, 2015

Mr. C has had a great week again, he's had mommy staying for the whole day every day from 7-6 and then grabbing daddy from work and then staying until 11. We have also had a few sleepovers that have gone really well.
This week we were able to discontinue C's injections for his clot which was very exciting since it is so hard to see all the bruises the needle leaves. We also heard back about our needs in order to go home and the continuing care assistants that are lined up have already taken care of trach children so we just need them to start here in the hospital to get used to C, Jarrod and I.
This week we're hoping to find out more about home equipment and will be starting day passes on loaner equipment. So soon I'll be hanging with my man at home during the day and he'll still be watched by nurses here at the hospital at night. These steps to getting home make everything so real!

Week 22 - June 14, 2015 

It's still Sunday! I am not late!
This week was a good week, I continued to have 7 am days this week, but Thursday and Friday we were able to take C home and we hung out while daddy was at work. 
Friday we had our nurse coordinator drop off the price comparisons for machines and supplies and tomorrow we will try to arrange an order and hopefully we will be home soon!
Today we took a big step and we took the monkey to church this morning, it was nice to do something 'normal', and we can't wait to do it again! 
This week we have our 1 month eye check and we will be starting to train the two continuing care assistants that will be coming in to our home 5 nights a week.

Week 23 - June 24, 2015

Good morning friends and family,
I realise this update is a bit later than usual, but with father's day and the beginning of this week being so crazy it didn't get done. 
Last week C and I spent most of our days at the hospital so that if things needed to happen for our discharge planning we would be here. Monday Jarrod had the day off, but because we were expecting an eye exam we all hung out at the IWK. But we didn't actually get to see the eye doctors until Tuesday! The good news is C's eyes still look good and we won't have to have them looked at for at least 6 months. 
Wednesday we met our first care worker, and some of the team that would be doing back up for sick calls etc. and she is fantastic. She has been doing nights here at the hospital since Sunday and everything seems to be going well. 
Thursday C and I took a walk up to Dalhousie where he got spoiled, along with a co-worker's little guy at a joint baby shower. We were not excepting the showing that we received and felt quite blessed by the team. Once we came back we met the second worker who will be part of our home team and he also seems good, we will most likely have a few nights with him here at the hospital next week before we get to go home. 
Thursday also brought some complications between insurance and medical equipment which meant our stay was extended into this week, BUT, we have an amazing team that is doing their best to get us home as soon as possible. 
One very exciting thing was Jarrod's first father's day, we started with getting up super early, then Daddy having a nap before church and then some time spent with friends at a BBQ and time with aunt Courtney.

Week 24 - June 28, 2015

This week Jarrod was off work so we spent a lot of time at home and doing "normal" things like a Costco run and trying to get the house ready. It has been great, and it was made even better by having the little monkey with us! 
This week C had us on our toes and his secretions from his trach changed just enough to get us worried which resulted in us staying at the hospital today to be monitored after a coughing fit led to an entire trach change last night. At this point C seems to be doing ok, super alert when he's awake, no fever, still having normal wet diapers, etc. So now we just wait for the results of the secretions that we had sent to the lab to make sure it's not more serious.
And exciting!!!! We just had the charge nurse drop off one of the loaner machines so with that and the ones we use from his room we should be at least able to go on overnight passes and very soon we should be discharged! We CANNOT wait!
P.S. I swear he's awake lots too.... Just not as many pictures are of those moments!


Week 16 - May 3, 2015

So another big week over here, and it all started with one of the nurses deciding that it was silly that Mr. Man was being limited on his milk intake.
She decided to warm up the milk and just let him take as much as he wanted and he ate the whole thing! So now we let him tell us how many ml he'd like to take, so he is now taking about 80% of his feeds by bottle. This week we might try to feed straight from the source, but again, we'll let Mr man be the judge. With his food we have reduced the calories so that he doesn't keep gaining weight as much as he has. Currently our monkey is 9lbs!
This week we actually didn't get a family meeting because there are about 12 different people wanted there so we are praying the meeting comes together and goes well Tues afternoon.
This week C had me changing his dressings and I watched his newest trach change so that I can do the next one. Jarrod has completed the manual and will also be working towards suctioning and dressing changes.
Ever since moving to NICU 2 we have been getting a lot more freedom. We are able to take him in and out of the crib, hold him as long as we want and with our stroller at the hospital I have taken him, with our nurse, around the 3rd floor a couple times these last couple of days.
This week daddy and I also had a date night that involved sushi and a cheesecake sampling and got a night out to friends the next night.

Week 17 - May 10, 2015

Happy mother's day everyone! Especially to my mommy!! 
This week seemed to go by so fast! Jarrod and I did get our family meeting on Tuesday and it was nice to have most of the team all together, and to meet the people we will be meeting in the near future. The big topic was whether or not the paediatric floor would accept C, and that was a yes, so now we are waiting for the staffing so that we can move up to the 7th floor, we are hoping that this will happen tomorrow (on C's 4 month).This week we travelled outside with daddy and C liked the breeze but found it much too bright, so we will need to find him some sunglasses.
Mr. Piggy is now eating most of his feeds by bottle, and this weekend we have been trying to feed without topping up with an ng tube and so far, so good. Tonight is weigh night so we will see how it goes.
This week was another big week for mom and dad too. Jarrod has been doing more suctioning and has done a couple of C's trach dressing changes and is doing really well; and I did my first trach change.... It was terrifying, but we both survived and will be doing it again this week so that I can get my 3 in and then my next training will be for his medical injections. 
We are getting so much closer to home! 

Week 18 - May 17, 2015

And we are closer and closer every week to getting home! 
On Monday we were moved from NICU to PMU (paediatric medical unit) and have been taking this week to get used to being in new surroundings and new operations, which after 4 months have not been easy. 
This week has been a lot of passing on information and history to SOOO many different groups of people, it's hard and a little annoying but anything to get us closer to home! Speaking of home, one of the first people I talked with was the doctor covering rounds and she was saying that if we were there for three weeks she would be surprised, so we are all praying and crossing our fingers. 
Unfortunately on the with the move up C was swabbed for MRSA a resistant strain of staph and came back positive. For the most part it means nothing, but to those with weakened immune systems like those on C's floor we are on contact precautions which means any of the staff coming in are wearing gloves and gowns. We are allowed visitors so if you would like to check out our digs you are more than welcome to. 
This week for C was a bit rough, he didn't feed as much this week and lost some grams on Wednesday but since then has been slowly taking more.
We have also done another trach change which he slept through, dad has been doing more suctioning and dressing changes and gave his first injection Friday night, so things are definitely coming together. 

Week 19 - May 24, 2015

Good Morning everyone! I must say this weather is getting better and better all the time, I can't wait until we can bring the little munchkin home and go for walks together.
This week was a bit of a slower week. C has been increasing the amount of food he has been taking at each feed and has also been gaining some weight, he is now 9 lbs and 11 oz!
This week was a bigger week for daddy and I; Jarrod did his first trach change and rocked it; we gave C a bath and he slept through the entire change. I have also finished my trach training as of yesterday with my third trach change and we both have now given injections for Mr. Man. 
This week we are hoping to get some more info on when we can get home. With the training coming together what we are waiting on now is getting the nurses and the equipment lined up to come home.

Week 20 - May 31, 2015

Good morning everyone,
Again this week C had a fairly uneventful, unchanged week. He is continuing to go up in the amounts he eats and is slowly gaining weight. It's been wonderful to watch him grow and develop, yesterday I was watching him move side to won't be too long now before he is rolling over.
Today Jarrod will be doing his second trach change and will be getting closer to getting Mr man home. Talking about getting home, we have found out that our insurance company is very easy and is making getting everything set up easy for our community nurse that arranges everything for us. So we have started the process to line up our equipment for the house and an email to the company that provides continuing care assistants (CCAs) has been sent. Once we have a few CCAs lined up they will come to the hospital and train in the skills lab and after that will do some shifts in the hospital to get used to C, Jarrod and myself.
In the coming weeks we have also been asked to stay at the hospital so that we can get used to what C is like at night and so that we are doing most of his care. They like to do this so that we get a transition period and are not thrown into the deep end at home.
We do have a goal date to get home, but are not wanting to jinx it, so just know that we now have a date that we are working towards and we should be home sooner than later!

Thursday, May 21, 2015


Week 12 - April 5, 2015

This week was a bit of a hard week; we tried to take C off the invasive vent but after an hour and a half he was just working way too hard to breath in so had to be reentubated. The next step that we have been discussing with the team is surgery for a tracheostomy. There is an OR booked for this week, but Jarrod and I are going to speak with the ENT on Tuesday before we sign a consent.
On some more positive notes, Jarrod and I have been able to give a few more baths, and have experienced our first poop explosion for ourselves, and man was is a doozy. C is also up to 6lbs 5oz and is now big enough that they have changed from daily weighing to twice a week.

Week 12.2 - April 7, 2015

Friends and family, we have decided to go ahead with the surgery after talking with our ENT doctor tonight. So tomorrow morning at 11 our little monkey should be losing this tube and will be getting a trach. Prayers are very much appreciated.  

Week 12.4 - April 9, 2015

* Wednesday we went into the hospital thinking that we would be sending off our little man to the OR; however, there was a delay until the next day because he also had to have some work done on his eyes*
We can see his face! Connor came out of the OR around 1135 this morning and from what the nurses were told he did very well. We left the hospital once he was back to do a few errands and now are getting ready to head back to see him. As for his eyes we won't know until next week exactly how well the treatment worked.
Thank you everyone for your thoughts and prayers these past couple of days. And really through this entire process. 

Week 13 - April 12, 2015

Hi everyone! A much less stressed, much less worried mommy here to update you all today 
This week was a busy week. Jarrod and I came in on Wednesday morning to the hospital expecting to watch our little monkey head off to surgery. Instead we were greeted by the Opthalmology doctor and he let us know that C also needed eye surgery. With that news (which took everyone by surprise, incl. doctors) we decided it would be best to have the procedures done together, and so we were delayed a day. So we stayed at the hospital Wednesday night so that we could see C before his 8am surgery and also stayed Thursday night.  
Both the procedures went well, the eyes won't be checked until this week to see how things are progressing, but we are going is in the right steps. As for his breathing tube, as of this morning C is breathing on his own with the machine only giving him pressure and not any breaths because he's doing all the work by himself! He is off all pain meds and back to all his regular meds and eating his max amount.
We are so relieved at how things are now progressing and I am now looking forward to what this week might bring.  

Week 14 - April 18, 2015

Ok, first off, this kid is FREAKING adorable. I was going through the pictures from this week and I couldn't decide what one or two to share with you, so know that a lot of thought went into this this week.
Second, I know that it is only Saturday night BUT daddy is away on a much needed break in the middle of nowhere NB and tonight ended up being quiet for me.
Ok, now for the update. This week turned into quite the week. On Sunday, C was switched to CPAP on his vent which meant that the machine was just giving him the pressure to help his lungs stay open, and he was doing all of the breathing by himself, which was fantastic!
On Monday morning, his nurse who had him the day before noticed he needed a lot more suctioning than he did Sunday and at one point got some bright green come up so C then had that tested, his blood tested, his urine tested, and his spinal fluid tested to try to pin point what kind of bug he had growing. We did have cultures grow positive and they went to Infectious Diseases to help with the combination of antibiotics since the cultures were positive in several places. The hard thing was that it took three days for a good central line could be put in for his meds, but he was more bothered by that then by being sick. C, has most definitely started feeling better.
On Wednesday ophthalmology checked C's eyes and one eye was looking better, but the other was showing a bit of swelling; by yesterday when they checked again he was looking better.
Thursday was the first trach change, ENT came to do the change and check on everything and they looked happy with everything and seem to think that C will be good.
Since C has started to feel better they have started changing his feeds so instead of a continuous feed he is getting the same amount of food but in waves of 2 hours through his nose tube and then a 1 hour break, and he seems to be handling it quite well. They are also working on bringing his vent back to CPAP since they changed it back to oxygen and breaths

 Week 14.4 - April 21, 2015

This special mid week post is because we have hit 100 days. Today we switched from a CPAP mode to a completely different machine that just gives humidity, he is almost 8 lbs. He is starting to get his feeds back to a more regular routine, and we gave him some milk through a syringe orally and he LOVED it

Week 15 - April 26, 2015

Happy Sunday everyone! I was so excited to wake up to sun today, oh. my. goodness. 
So Mr. C had quite the week this week, lots of changes were happening.Monday, we switched C from a vent to the high flow machine so that he would be getting just the humidified air and has been doing great on it the entire week. He also had his eyes checked again on Monday and they seemed pleased with the progress since last Friday, he was put on steroid drops to help so we are glad that they did their job. 
Also this week we were working on getting C back to gravity feeds and introducing a bottle, and I am happy to say that it all paid off and on Friday I was able to give C his very first bottle of 10ml and daddy was able to do the same that night. So this week I believe the plan is to try to get the volume of the bottle up so that he can at some point get rid of the breathing tube. 
On Friday C also was moved from NICU 1 to NICU 2. He is now by a window and the hope is that he will get two sites so that we can start the physio aspect and doing more tummy time and playing on a mat or sitting in a chair sort of thing. 
This week mommy also took over suctioning when she was around, and is hoping to be starting the daily trach cleaning this coming week. Daddy is also reading our materials so that he too can start.
This week coming mommy and daddy will be part of a team meeting with the neo staff, and the peds staff, to get a good look at what the next little bit holds so that we know what to expect, part of this is when we will be moving to the paediatric floor. 

Saturday, April 18, 2015


Week 7 - March 1, 2015

Week 7?!
First of all, how is it March first? I feel like it's only supposed to be January.
Jarrod and I are doing well, we have both managed to stay healthy this week and we made it to church this morning smile emoticon Tomorrow night Jarrod and I will be taking some time to look at cars since ours died at the end of December. We are really hoping to find one that suits our price range and fits Jarrod comfortably with room for the car seat.
C is doing fantastic this week. As of yesterday he was 1.99kg so is gaining some good chub. He has also gone up in the amount of milk he gets so is again at his max feeds which is close to 40ml.
Tomorrow they are going to try extubation again, with the ENTs present. We are hoping that this is it since both scopes came back clean and he had been on a course of steroids. He is also on all the minimal settings of his vent so we are all hoping this is a good sign.

Week 8 - March 8, 2015

Our little monkey is doing really well. He is very close to 5lbs and is still eating like a champ. We have found the max amount of food that he is able to eat at one time but it's still lots and he seems to be satisfied until his next feed.
As you can see Mr C still has his breathing tube in. The ENT team and NICU team had a discussion Monday morning and decided the best thing for our little man would be to give him an extra week for his airway to get stronger. We agreed it was the best decision, but, being the monkey that he is, there were a lot of bean bags used to stop a head moving or arms and legs stretching out.
This Tuesday is when we will be trying again to get the cpap started and if all goes well C will also get a bed upgrade to a crib as he is now getting too warm in the incubator.
For mommy and daddy we are still looking for a car and are getting the house, and specifically the nursery, ready for a month from now when our monkey is ready to come home

 Week 9 - March 15, 2015

It's Sunday, so obviously there's another storm. But a little bit of sunshine we have is that our little monkey is growing so much smile emoticon
This week the breathing tube and airway were looked at and with the swelling that was present they decided to keep the breathing tube in for a little while longer. He has been doing pretty well, just irritated with the tube, but is breathing with room air and the machine is being weened down to a setting that is just pressure making sure everything is peachy.
Other than this, the other milestone was that our little man moved to a crib! He was getting too big for the incubator and was also getting warm so they decided to move him over smile emoticon
This week we have nan and pop visiting from Ontario so there will be lots of time hanging out with our monkey.

Week 10 - March 22, 2015

2.5 months guys! This week C had daily visits from nan and pop (Jarrod's parents) and that meant we made it to most of the morning rounds, when it wasn't snowing.
I think it was in rounds where they said it best. They said "we're just waiting". This week there were no changes in how much he ate, no changes in meds, and no changes in the fact that he is breathing solely on room air.... So we are just waiting and praying and hoping that the swelling in his airway is going down.
This week was big for mom and dad as we finally have a new vehicle and will be selling our corolla hopefully today, if not, sometime this week.
So now we wait, we wait for C to get the swelling down, we wait for the car to be taken out of the garage, and we wait (along with everyone in the maritimes) for spring.
Oooooooohhhhhh! And I think we are getting a red head.

Week 11 - March 29, 2015

C is still doing great. He has still been gaining lots of weight and is almost 6 lbs! This week we've been getting lots of snuggles in and Jarrod got to give C his bath the night before his big photo shoot for the school of nursing, hopefully in the next couple weeks we'll have some photos to share. This week C is going to have another scope done on Tuesday and this will hopefully be the lucky time that he keeps the tube out 

Thursday, April 16, 2015


Week 3 - February 1, 2015 

3 weeks! I can't believe at the end of this week our little man is going to be a month old. This week was.... something, Jarrod's mom was down visiting and just left yesterday. Having her down was a huge help since I ended up back at the iwk Monday night with a temp of 39.9 and was there until Thursday. Friday Jo-Anne and I started organising the house to make it look more lived in.

C is doing amazing, he has been putting on weight like crazy and is now over three pounds! His meals are now increasing a ml a day so every two hours he's getting 7 ml starting at noon today. I have also officially developed mom brain as I am excited that my boy is now pooping on his own (he's going to LOVE that I've shared that with everyone). The one thing we are waiting out is a leak in his breathing machine; he seems to be handling it well but the doctors and respiratory therapists are keeping a close eye on him and the machine to decide what they are going to do next. — feeling proud 

Week 4 - February 8, 2015

And here we are, 4 weeks ago our little man stole our hearts, C is still doing amazing. 
This week we hit 1600g which means he is now big enough to wear his id bracelet on his leg which is quite exciting and seeing him pack on the pounds... Er....grams means he looks bigger every day! 
Because his feeds are increasing and he is tolerating them well, he was taken off one of the iv bags and the second iv bag we are hoping will be taken off when he hits full feeds after tomorrow's increase. We are also still watching his breathing tube which still has a leak, but C is handling it well. Because of this they have also decided to start weening him off the machine so it won't be too long before the time is gone and he just has the nose piece for oxygen. 
A milestone for mommy was that I got to change a couple diapers these past couple of days. Thankfully, they have just been wet, there will be lots of time for poopy diapers when he comes home!  feeling proud  

Week 5 - February 15, 2015

Ooooo it's Sunday! I almost forgot an update since I've been home all day and completely forgot it was Sunday.  
I've been good this week, I even took advantage of some sun this week and went for a bit of a walk. (Which with all this bad weather I won't be doing for awhile now).  
C has had a big week, he is almost 4lbs! This week they tried to take his breathing tube out but he just wasn't ready yet and only lasted an hour with an oxygen mask, he is now back with a breathing tube, sadly still with his leak, but is doing better then before. This week his iv has been taken out and he is getting all his nutrients from milk! 
This week coming we are hoping to keep working on his breathing and will be listening to his cues as to when he is ready to be on the breathing mask.  
This is one of my favorite pictures from this week: our little superman

Week 6 - February 23, 2015

Hey friends and family, here's this week's update:
This past week was a big week for our little man. On Tuesday they tried to put C on a mask again and he only lasted 25 minutes, and then at midnight he pulled on his tube enough that he had to be reentubated. Today they are going to try again but with an ear, nose, and throat Dr there to do a scope of his airway to make sure there aren't any problems.
C has also made the jump from being fed every 2 hours, to every 3 and is doing well with the increase of milk. The increase is now determined by his weight, so he will get the same amount until the next weight milestone. Speaking of weight, C is now 4lbs 5oz and is getting so big!
As for mommy and daddy, we are good, yesterday was spent very sleepily as we didn't get to bed until 4 in the morning from a quick trip to emerge for a stomach pain that traveled down the middle of my stomach. Everything came back negative so now we're just crossing or fingers that the only hospital visits we will be making well be the ones to visit our little man until he gets home.


Week 1 - January 18, 2015: 

Family and friends, we have made it a whole week with our little man. I was discharged on Thursday, and over the last week some of C's milestones include: no photo therapy for 3 days- and counting, the nurse practitioner was able to get the more permanent central line in, stomach lines are out, and we tried out feeding (which he's not quite ready for yet). But the biggest positive is mommy got to have skin-to-skin for an hour and a half last night and he did amazing
 — feeling blessed.

 Week 2 - January 25, 2015:

Two weeks! C and I are doing really well, my milestones were going to the grocery store and getting to church this morning.
C's milestones this week is that he is almost 3 pounds, has stayed off photo therapy for most of this week and is up to taking 1ml of milk every 2 hours through a feeding tube. We have had skin to skin almost every day this week and made daddy jealous with pictures because he was sick all week, but the week ended with daddy getting some skin-to-skin for an hour yesterday.